Thinking of you, PeterPan

[Terabith]

Hope appointment went well today. 

[PeterPan]

You're so sweet! Yes, it was interesting, and we agreed to do some *more* testing with the psych. She had done the ADOS and a bunch of tools for autism to see behaviors and be able to document those and tease apart causes on those. We talked about the ADHD question, which is perennial and interesting. He passes the Quotient with flying colors, but to her she's still seeing the behaviors and suggesting we pursue meds. I think it's time for me to get a fresh ped, someone who sees a lot of autism, so that means I need word on the street to find that.

 

We're going to do more testing (hopefully, if he agrees), because he didn't participate well for the IQ and achievement testing. We really wanted to update that, because she wants that and to see how his mind works (ie. reading tea leaves in it) to update his IEP placement and supports. Our ps is supposed to do that, but they have been SO unhelpful and non-supportive and antagonistic that I want to get her take, an outside take. She has spent a lot of time with him now and is an expert in autism, and he is very different from how he was 2 years ago when we wrote the current supports and placement. So I think it could come out very differently, and I want to see that. 

 

So who knows. There's this funny thing that people run verbal IQ testing on him and at the same time say oh he has language delays. So I don't know what she's going to do. We just figured more time, see what happens. We're going to change the location so it's fresh for him. 

 

It's weird, because you wouldn't think an IEP would be SO important to a homeschooler, but to me it's really important. I just think it should be right and that it's right to want it right. And signing it the last two years was ok because it was reasonably close, but now it's not. I think we could be looking at an entirely different placement, because he's very different now. So that interests me. I want to see what it informs us about how we could support him better in the community, etc.

 

She's coming down hard on the need for more behavioral work (no duh) and language work. I'm making calls out the wazzoo trying to find someone who would be a good fit. In some ways I already know what needs to be done and could do it myself, but I'm just MORTAL. I want someone to work with. But my list for language? Long. And I'm beginning to collect worksheets to show the school to say yes, language affects academics. Like it's obvious, but they have been SO antagonistic and intentionally unhelpful. For instance, if you can't make comparatives, how do you do a math worksheet that asks you to write a sentence explaining the change shown in the picture?? You can't. Even with a scribe, you can't get it out if you don't have the LANGUAGE. So he can do the math and fill in the blank ("The boy grows ____ inches.") but he can't then write or dictate the sentence to say "The boy grew taller." That is just so rubber meets the road, so reality. So I'm trying to find an expressive language therapist to add to our team. I have calls in tons of places. Had one that was a bust even though I liked her. I may go crazy.

 

On the plus side, the niacin plus vitamin D+K2 continues to work very well, keeping him generally calm and stable. The D+K2 has been a miracle. When we switched to the product with K2, he actually became affectionate and easier to hold, which has been ASTONISHING. Like before, we would get these crash hugs or jump hugs. We knew it was a hug, but it was just so fast, like he couldn't handle it. Now he'll sit on your lap for an hour and cuddle by choice. I kid you not. 

 

So we'll take that. Lots of good, forward momentum! We're going to these social skills groups at a therapy place. It's a lot of effort to get there, but so far he never argues. Ok, I paired the place with DONUTS.  :lol:  :lol:  :lol:  Seriously, I did. There are multiple donut shops on the road and I just stopped at one each time. Now I'm gaining weight because I'm eating donuts and not making it to exercise.  :glare:  But he's going willingly! And he is making friends, getting playdates. Super cool. And it's such a high support level, with an OT and SLP in the session with just 5 boys, that we can problem solve and provide high support. So we've been able to get help on waiting behaviors, all kinds of things.

 

One of the OTs had suggested theraputty (score, works well!) and comics for waiting. So I ordered him this whole stack of comics by a publisher Alexander McMeel. They have a line of comics for young readers that have larger print, less on the page, extra colorful text. It's really just right for him, not intimidating. And they're screened, because they're meant for kids, not a general audience. Like I don't know if Peanuts or Foxtrot or whatever had anything questionable, but I feel good about having them screened and selected to be appropriate for the audience (YOUNG readers). So he really enjoys those! We practice using them as a strategy, and now he'll read them other times during the day for even 15 minutes at a pop! So that has been really exciting. 

 

So that's why I was saying we've just got a lot of forward momentum now, which is good. We had some strong things to consider in the psych meeting, but some of that she deferred on. She said he's an onion and she wants a chance to get more autism-specific intervention, get our IEP changed, get our tier and funding level bumped, and see what happens when we bring in more supports to address the autism question. Then we can say ok what remains is something else. But she has NOT put on the table any mental illness, which was really a relief in a way. We've been dealing with some pretty challenging behaviors, and we let her see him a session without the niacin, without the D, without any of that extra support. He's pretty astonishing, and she said his ADOS, which was already in-range handily for autism, would have gone up another two if he had been that way on the day she ran it.  :huh:

 

So, other than eating too many donuts and too much fast food, things are going pretty well! We have a lot of forward momentum, and I think if we can find a good SLP to dig in on expressive language we'll actually get somewhere (ie. getting our funding changed, our IEP updated, etc.).

[Storygirl]

I'm glad this new psych is helping you sort through some things. Even though there is a lot to sort, it sounds like she is giving you new information to work with. I hope you find some new sources of help, since some of the people you have been using -- pediatrician, behaviorists -- seem to have plateaued in their ability to help.

 

The language issues are always interesting to me, because DS13 also has holes, even though his verbal scores are his highest in testing. (Lost a bunch of things I had typed out about that, oh well.)

 

The Quotient test is also interesting. Our pediatrician ran it on DS several times. DS scored a 0 on the attention measuring section. The doctor said his score was no better than if he had just pushed keys randomly. Now, DS does have attention issues, but I don't really think that he has more inattention than everyone else who is suspected to have ADHD and takes that test. His scores didn't go up when retested after being on meds. We (DH and I) decided that some of DS's other disabilities were affecting his performance on that test and preventing it from being completely accurate.

 

So I do think the Quotient test can be interesting. But I also think it is just one tool, and I have reason to think it might not always be completely accurate and reliable. The idea is that using that test removes the subjectivity from the ADHD evaluation, because other ways of determining ADHD (checklists, etc) rely on observation.

 

And those checklists can't be relied upon completely. Last year our pediatrician had some of our teachers fill out forms to update the ADHD info in her files ,and two of the teachers answered the questions about DS so differently that the ped said it was as if they were evaluating two different children.

 

It think it could be worthwhile to think about the ADHD issue again with your son, since this psych "sees" it. SIgh. It can be so frustrating when you are trying to pin down issues, and some people "see" it and others don't.

[PeterPan]

Types of Attention - Sustained, Divided,  The psych talked about 4 types of attention, and her point was that a given "test" might be looking at one type of attention and not even addressing the OTHER areas that we as parents/teachers could be seeing. And I look at the list and go hello, yes, I see issues in those areas in real life. So that was interesting. 

 

The other interesting thing I'm thinking more about is the connection between methylation, dopamine (which is part of the methylation cycle), and attention. It has made me wonder if we could fix something in his methylation cycle, improve the dopamine levels, and thereby improve the attention. I don't know, but it seems like it could work, lol. So I need to find somebody who has a clue about that to help me.

[prairiewindmomma]

Theraputty is awesome. If you need to mix it up, try Thinking Putty. The mini tins are GREAT; super scarab and super lava are some of our favorites. https://www.amazon.com/s/ref=nb_sb_noss_1?url=search-alias%3Daps&field-keywords=thinking+putty

[prairiewindmomma]

Types of Attention - Sustained, Divided,  The psych talked about 4 types of attention, and her point was that a given "test" might be looking at one type of attention and not even addressing the OTHER areas that we as parents/teachers could be seeing. And I look at the list and go hello, yes, I see issues in those areas in real life. So that was interesting. 

 

The other interesting thing I'm thinking more about is the connection between methylation, dopamine (which is part of the methylation cycle), and attention. It has made me wonder if we could fix something in his methylation cycle, improve the dopamine levels, and thereby improve the attention. I don't know, but it seems like it could work, lol. So I need to find somebody who has a clue about that to help me.

 

On the dopamine thing, this is one thing 23andme bulk data shows through promethease. Note that 5-HTP and melatonin deplete dopamine if that's an issue for you genetically. L-tyrosine is a precursor and l-theanine and curcumin will both help boost levels. I think there's something to your thought, and that's actually the area that I've been tinkering around in with supplements here, but I haven't found someone super knowledgeable yet either. Report back if/when you do. :) 

[Terabith]

The D plus K2 is interesting to me. I’ve been taking megadoses of D for years and couldn’t get out of the 30’s. Switched to a much lower dose with K2 and I’m in the 60’s now.

[PeterPan]

The D plus K2 is interesting to me. I’ve been taking megadoses of D for years and couldn’t get out of the 30’s. Switched to a much lower dose with K2 and I’m in the 60’s now.

 

Yeah, your gut is supposed to produce K2, but at some point I think like just be really pragmatic and do it, kwim? And I wonder if the doses I've read online are low. I haven't tried a separate K2 with him. I just wonder how up we could take it before we saw dimiishing returns...

[PeterPan]

On the dopamine thing, this is one thing 23andme bulk data shows through promethease. Note that 5-HTP and melatonin deplete dopamine if that's an issue for you genetically. L-tyrosine is a precursor and l-theanine and curcumin will both help boost levels. I think there's something to your thought, and that's actually the area that I've been tinkering around in with supplements here, but I haven't found someone super knowledgeable yet either. Report back if/when you do. :)

 

Yup, this is what I need to figure out. D also affects it, probably that same way, by affecting melatonin levels and steps in the cycle. I haven't had a chance to dig in on it. It just makes sense to me that it would be more foundational to try to improve the dopamine levels through the methylation process rather than going to meds. I'm not anti-meds, but I would like to see if it can be done. It just feels like we're that close on him, like there ought to be a way.

 

I thought I saw a list of docs who like to deal with methylation issues, but I don't remember where. Guess I'm gonna have a hot few days googling. :D

[PeterPan]

And yes, I ran his data through promethease. I also ran it through KnowYourGenetics, but they're kind of screwy in that they look at each gene in isolation instead of thinking how they interact. And it seems to be way more complex than that anyway. Like I don't really have a gene that says put him on niacin but it works. So what I'm finding is superficial and incomplete. 

 

But that's sorta like saying my standard is omniscience and a conversation with the Almighty to sort it out.  :lol:

Edited February 16, 2018 by PeterPan

[Terabith]

Promethease was so overwhelming and I couldn’t understand half of it. More than half.

[nature girl]

Promethease IS overwhelming! I used it on 23andMe data for myself last year. But if you know what you're looking for and search on those things, it becomes more manageable. It also flagged big risks I wasn't aware of.

 

Peter Pan, how did you decide on the Niacin, D and K2? Was it the result of testing, or just something you wanted to try on him?

 

I've considered doing testing on DD, to see whether there was anything we were missing. (I actually bought the aforementioned kit for her! But then saw they said not to use it on kids...even though they didn't explain why, I got worried they might be suggesting they might not be able to ensure privacy in the distant future, so just used it on myself. Now I'm guessing it's actually because kids under 18 can't give consent..) Anyway, DD's behavior on meds is good, but we're starting to see issues creep in, she's developing tolerance, and I really don't want to increase her dose. I've been keeping her off meds on weekends to try to reduce tolerance, and I can see how big some of the behavioral issues still are...and they're getting harder to contain as she gets older.

 

So I've been wondering whether there's something dietary we can try...She's had digestive issues (constipation as an infant, a lot of spitting up, and then 2 years of diarrhea between 2 and 4, so even though those have resolved, I've been wondering whether there's something going on in her gut. We've done elimination diets, and tried various supplements, but stopped searching when we gave up on trying to help her naturally. Now, I really want to try again...But I don't know whether a genetic test will give us the info we need to know.

[PeterPan]

Promethease isn't so bad. It just takes time. You can limit it by things that flag grey or red, search fields, use their pulldowns, etc. I spent a lot of time searching by topic and writing down gene names. Then you can google the RS# and gene and start to learn things. The info they include isn't necessarily very interesting, but when you google the hits more shows up.

 

[exercise_guru]

peterpan

do you have an ipad? have you looked into myscript and mod math. My script works well with a little training and even reads quite messy handwriting. mathpad is very good but only does one problem at a time. Can you child write things that you can read even if they are not legible to someone else? Because if you could give a big space to put in the answer for math and if he can write it and say it outloud at the same time you can check it as he works. you could even use the white board technique and pass them back and forth. It keeps them engaged and gives instant feedback. I think the reason scribing is challenging is because math thinks with the motor system so the act of moving the hand to take action with the answer feedsback to the brain. I am suprised there is not a good math computer program for this. I wish they had mathpad where you could make a whole worksheet because it is darn good at inferring handwriting. One that was highly recomended at this site https://www.understood.org which has an awesome awesome app finder tech search found Panther Math Paper app for ipad that looks really promising.

SnapType and clickerdocs are both apps I found . It would allow someone to take a picture of a worksheet and then anotate it with ipad. That would work well with the app below

 

the myscript stylus app works like a keyboard so you can put it in any app like evernote or one note etc and also if there is a program he can write on pdf then he could do that as well. I am getting my son trained on it and it reads his handwriting even if it is messy and turns it into text. Right now I am having him use his finger because I want him to build automaticity with the handwriting but I am looking into which stylus will work with the regular ipad.

 

I also like the ipad dictation more than any other that I have used but I am still looking at options. I am annoyed there are not better communication apps and writing apps for those people who struggle with fine motor. Surely there is a strong need for this.

 

 

 

For connecting the fine motor to the brain:

Since you are into way out there ideas. Have you heard of the Arrowsmith model? they have a school in Canada. I read and watched every article I could about that school. I actually made my own version of symbols and had my son work on reproducing them and writing them to help him build fine motor skills and tracking skills. Here are some links if you feel like reading sometime. I learned about it through the Norman Doidge . The brain that changes itself. I don't know if it totally was as cool as the article said. I did do tons of clocks and tons of symbol tracing. My son really just had a visual hand challenge. I feel like I blasted through rock but the symbol tracing did help and got him control. I also got a light board and had him trace on that.

 

http://www.arrowsmithschool.org/wp-content/uploads/2016/12/raising_cognitive_capacity.pdf

http://www.arrowsmithschool.org/wp-content/uploads/2016/12/How-to-Rewire-a-Brain.pdf

 

 

I think the key for me is to get my son independent and if I can use technology I think it's getting there. I am an engineer that worked on the original voice recognition it was clunky. Now with increased processing it is pretty darn good. My old palm phone had a gestures to text that was so good . The myscript isn't amazing but it is the best I have found.

Edited February 20, 2018 by exercise_guru

[PeterPan]

Thanks, I'll look into those apps! We're sorta crazy right now, updating evals, but at some point in the future. :)

[caedmyn]

Curious...what doses of niacin, D, and K2 are you using?

[PeterPan]

This is awkward. I'm not a medical doctor, so I don't want to be out giving advice. I've seen people on blogs saying they're using no-flush, and to me that is illogical. Also geodob here on the boards pointed us to some info showing that no-flush processes differently and can affect the liver. I don't use that. I personally take 100mg tablets 4X a day. The half-life of niacin in the body is 20-45 minutes, and when you do the math (multiply that times 6), a full wash is basically 3 hours. That is what I see with my ds, that his symptoms were reappearing every hours. With him I started with Philips Good Energy gummies. They have inulin, which may or may not be useful, and they're easy to get compliance with. Each gummy has 10mg niacin. Not the regular gummies, the Good Energy gummies. Just read the label. I find them at Krogers, Target, etc.

 

I started with 10mg, saw slight improvement, but was only dosing him once a day. I talked with my nutritionist, and she's like no idiot you have to do divided doses and take it up to 25. So we bumped him to 4X at 20mg (2 gummies) and then I found a 25mg KAL niacin chewable tablet. My ds doesn't chew it but he can swallow it. 

 

So right now I use a mix that works for us. I take him his 2 gummies in the morning, because he can start them before he ever gets out of bed. Later (within say 2 hours) he gets his breakfast vits (calcium, D, etc.) and there will be a 25mg niacin tablet there. Then, about 3 hours later, he'll have his lunch vits with another dose of niacin. Then dinner vits with another dose of niacin. And he gets another dose of niacin before bed. That's basically 4X.

 

If he's stressed or sick or out and about, I use the niacin gummies. It's easy to keep those on-hand, and that way he can just have it. If he's very stressed or he missed some doses for whatever reason, I'll do 1 gummy an hour along with sensory and just work on getting him calmed back down. There might be better ways, but that's what I do.

 

There's some evidence that getting the niacin right lowers the methyls and as a byproduct improves serotonin levels. My ds literally went from being constantly cranky and aggressive to happy autistic. It was really astonishing. 

 

I try to avoid getting it too high, because he's not quite used to the flushing. In theory flushing is healthful, but I don't want him connecting it with the vits and refusing to take them. As long as the doses are at least 2 hours apart, he doesn't flush.

 

The D, well currently I'm using a product that has 2500 (IU? I forget the units) per capsule along with around maybe 100 whatever the unit is of K2. Both in one pill, done. I'm experimenting with 1 capsule per day (breakfast) vs. 1 at breakfast and 1 at lunch. He's noticeably more affectionate with the higher level, but too much D drops his melatonin and makes him later to sleep. Too little D, same gig. So I'm sorta doing the Goldilocks thing. I *think* we're going to stick with 2 capsules (1 breakfast, 1 lunch), which is 5000 per day.

 

Some of that is particular to the person and  your genetic defects, what your gut is doing, etc. I'm not a doctor. The D has *stabilized* his behavior, so we aren't getting the crazy ups and downs we were getting with niacin alone. D pulls methyls off B12 as part of the methylation cycle, so it makes sense that it would be stabilizing for him. D is fat soluble and a more consistent level, where the niacin has a really short half-life. So with the D, it's a little easier to leave him with someone and know his behavior can be pretty consistent, even if they don't keep to the plan PERFECTLY. Like tonight, my dh didn't get ds to take his vits, even though they were out on his plate, right there waiting. So I came back from the Y and came back to an ok, calm, happy, affectionate kid. That's really good! That's not how it used to do. And that's a pretty low stress situation. I'm not doing that on purpose. I'm just saying the D is giving us some margin and stability. 

 

There's probably more I need to address in his methylation cycle but that's as far as I've gotten.

 

That D3+ K2 is from the VitaminShoppe, so you can just google it and you'll see the amounts. 

Edited February 20, 2018 by PeterPan

[geodob]

PeterPan, I was concerned to read how much Niacin you are taking. As if you take this amount continually, you have a strong risk of developing Hepatoxicity and liver damage. Continual overuse, can result in irreversible damage.

[PeterPan]

Geodob, we looked at the chart you linked, and the liver issues were with no-flush. I myself take 400mg a day, in divided doses, on the advice of a licensed nutritionist. Besides, you don't understand the level of what we're talking about. If I had to put my ds on Risperadone, I'm pretty sure that would be a tad more toxic to his liver.

[geodob]

The recommend daily allowance for niacin, is 15 mg.   

With 35 mg as the safe maximum.

So that with 400 mg, even if it isn't slow release?

You are at serious risk of a range of problems.

 

You should see a registered dietician, rather than a nutritionist. 

 

https://www.webmd.com/diet/supplement-guide-niacin#1

[PeterPan]

Niacin  Here's an NIH (US national institutes of health.gov) article on niacin and hepatoxicity. There's plenty of data on this, and it's more commonly associated with sustained release (which remember I'm not taking), unheard of below 500mg a day, and most common beginning at 300 GRAMS a day. So do we understand that would be doses 9-10X above what I'm taking??? 

 

The article says hepatoxicity is less common with regular niacin (what I use). There are also common symptoms (nausea, etc.) if you take the dosing too high.

 

There's no reason to think I'm frying my liver or my ds liver using the low doses I'm using of regular, not sustained release. Now these people doing 24grams a day of sustained release in a small child weighing less than 100 pounds, sure their liver could be affected. The article says for extended release niacin max recommended daily dose would be 500-2000mg. I'm reading blogs where people are doing way over that, trying to get improvement. I think that's scary, yes.

 

Even then, look how glib the p-docs would be about strong meds that definitely, definitely will fry their livers and cause side effects. 

 

[caedmyn]

Thx. I will have to ask my nutritionist about it. She has me take niacinamide and that has been quite helpful (though I started a couple other things I'd never taken before at the same time so hard to sort out what's done what) so I'll ask if it could be helpful for DS1's issues too. My kids all have some indicators of methylation issues but no testing so difficult to know exactly what the issue is.

[PeterPan]

23andme has their testing on sale right now for $69, just in case you're wanting to spring.

 

Here's an interesting post on reasons to do genetic testing

Blog - Autism Society San Francisco Bay Area